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Echocardiographic image collection and evaluation in infants with CHD: lessons learned from the imaging core lab for the Residual Lesion Score study
- Jami C. Levine, Steven Colan, Felicia Trachtenberg, Edward Marcus, Matthew Ferguson, Anitha Parthiban, Carolyn Taylor, Andreea Dragulescu, Benjamin Goot, Ronald V. Lacro, Carol McFarland, Shanthi Narasimhan, Matthew O’Connor, Marcus Schamberger, Shubhika Srivistava, Michael Taylor, Meena Nathan
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- Journal:
- Cardiology in the Young / Volume 34 / Issue 3 / March 2024
- Published online by Cambridge University Press:
- 22 August 2023, pp. 570-575
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Many factors affect patient outcome after congenital heart surgery, including the complexity of the heart disease, pre-operative status, patient specific factors (prematurity, nutritional status and/or presence of comorbid conditions or genetic syndromes), and post-operative residual lesions. The Residual Lesion Score is a novel tool for assessing whether specific residual cardiac lesions after surgery have a measurable impact on outcome. The goal is to understand which residual lesions can be tolerated and which should be addressed prior to leaving the operating room. The Residual Lesion Score study is a large multicentre prospective study designed to evaluate the association of Residual Lesion Score to outcomes in infants undergoing surgery for CHD. This Pediatric Heart Network and National Heart, Lung, and Blood Institute-funded study prospectively enrolled 1,149 infants undergoing 5 different congenital cardiac surgical repairs at 17 surgical centres. Given the contribution of echocardiographic measurements in assigning the Residual Lesion Score, the Residual Lesion Score study made use of a centralised core lab in addition to site review of all data. The data collection plan was designed with the added goal of collecting image quality information in a way that would permit us to improve our understanding of the reproducibility, variability, and feasibility of the echocardiographic measurements being made. There were significant challenges along the way, including the coordination, de-identification, storage, and interpretation of very large quantities of imaging data. This necessitated the development of new infrastructure and technology, as well as use of novel statistical methods. The study was successfully completed, but the size and complexity of the population being studied and the data being extracted required more technologic and human resources than expected which impacted the length and cost of conducting the study. This paper outlines the process of designing and executing this complex protocol, some of the barriers to implementation and lessons to be considered in the design of future studies.
Constructing ‘Otherness’ in the neighbourhood: que(e)rying older adults' experiences of and talk about socio-cultural change
- Jami McFarland, Carri Hand, Debbie Laliberte Rudman, Colleen McGrath, Katherine Stewart
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- Journal:
- Ageing & Society , First View
- Published online by Cambridge University Press:
- 14 June 2023, pp. 1-28
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Drawing from 108 qualitative interviews with 38 participants from an ethnographic study investigating older adults' experiences of inclusion and exclusion in two increasingly socio-economically diverse neighbourhoods, this paper employs a queer approach to identify how older adults construct and narrate socio-cultural change in the neighbourhood, as well as complicate simplistic binary understandings of older adults invoked in ageing-in-place literature. Drawing on neoliberal, heteronormative and racialised discourses, older adult participants engaged in practices of ‘Othering’ to narrate who did and did not belong in the neighbourhood. Participants referenced three primary non-residents when narrating change in their neighbourhoods: the homeless resident, the temporary resident and the racialised resident. Participants generally ‘Othered’ these three types of ‘residents’ as non-(re)productive, i.e. as not contributing to the social fabric of the neighbourhood in normatively valued ways. However, even as participants engaged in practices of ‘Othering’, a form of exercising power, it was evident that some ‘Othered’ figures disproportionately affected older adults' sense of belonging to their neighbourhoods. We found that shifting socio-cultural dynamics related to class, race and age, especially as they relate to the temporary resident, posed the biggest challenges to older adults' feelings of belonging, and relationships, to place. Our findings indicate that an inundation of moneyed people and unconventional living arrangements can inadvertently threaten older adults' social spaces and networks, as well as further bound their possibilities for meeting the neoliberal and heteronormative expectations of ‘successful ageing’ by working against older adults' continued social participation and connectedness. In turn, this paper considers the ways in which older adults are exclusionary and excluded subjects.
Invisible, unrecognised and undervalued: examining stories of unpaid work performed by older adults in their local neighbourhoods
- Katherine E. Stewart, Carri Hand, Debbie Laliberte Rudman, Colleen McGrath, Jami McFarland, Jason Gilliland, Wes Kinghorn
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- Journal:
- Ageing & Society , First View
- Published online by Cambridge University Press:
- 16 November 2022, pp. 1-27
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Over the past 40 years, positive ageing discourses that speak to an expectation of continued productivity have gained prominence within research and policy. Such discourses have been critiqued as placing disproportionate value on the extension of older adults' working lives, while obscuring other valuable forms of work performed by older adults. Despite the emergence of theoretical conversations about the expansion of conceptions of work, few studies have adopted an explicit focus on the work performed by older adults within their neighbourhoods. Informed by conceptions of work positioned at the intersection of critical gerontology and critical feminism, we drew upon qualitative data from a larger ethnographic study, generated from 17 participants aged 65 and older, to examine: (a) the various forms and contributions of unpaid work that older adults carry out at the neighbourhood level, and (b) the ways in which older adults' representations of this work relate to dominant notions of productivity. Specifically, each participant engaged in three types of qualitative interviews, including additional spatial and visual data generation: (a) completing a narrative interview; (b) carrying a small Global Positioning System (GPS) device to automatically log locations, completing an activity diary and a follow-up interview; and (c) participating in a go-along interview or a photo elicitation interview. Our findings highlight a range of unpaid work performed by participants in their neighbourhood, including formal volunteering, informal caring and informal civic participation. Although these forms of work were, at times, discussed by participants as enabling social inclusion, significant tensions arose from the general lack of discursive and social value assigned to them. In particular, participants described being subject to overwhelming expectations placed on older adults, and women in particular, to carry out this work, with little recognition or acknowledgement of their contributions to the neighbourhood. Taken together, our findings suggest the need not only to diversify understandings of the forms of work perceived as aligning with productive contributions to society in older age, but also to attend to the invisible work performed by older adults within their neighbourhoods. Additionally, we propose a variety of ways organisations and communities that benefit from older adults' unpaid labour may enhance accessibility, thereby reducing the work done by older adults to negotiate tensions between ableist expectations for productivity and their ageing bodies.